Super welcome to our family here
Your story sounds, sadly, all too familiar with most with lymphedema. getting an accurate diagnosis can be a nightmare, not to mention finally being able to get proper treatment.
The fluctuations in your legs/ankle are also much like very early stage lymphedema. Generally, in the earlier stages it does fluctuate - sometimes dramatically. Some have even reported hat the swelling actually goes away, only to come right back.
But, there is one symptom that is not common to lymphedema and that is the swollen lymph nodes. Enlarged nodes (lymphadenopathy - see http://www.lymphedemapeople.com/thesite ... opathy.htm
) is generally indicative of an underlying medical condition.
If not resolved - it can turn into lymphedema, but it may not have reached that state.
I was curious as to what the clinic said that you went to and if you had swollen nodes, why did they do the massage treatment. That is also contraindicated for lymphatic massage treatment. Also, were they certified (trained and licensed by a recognized school of lymphedema therapy? Bore they started the treatment, did they give you a complete physical evaluation?
The good thing about the lymphoscintigraphy test is that it can identify blockages in the lymph system. It's weakness though is that it can no measure the actual amount of lymph glow. This means, you could have an incredibly slow impaired lymph flow while not having an actual blockage. They do now have "real-time" lymph radiology tests now, but they are still very rare and the places that do them are very very fe and far between.
Generally, if all other tests have proven negative (CHF, DVT, etc) then it is accepted the condition is lymphedema.
Unfortunately, I do not know of a doctor in Denver that can help. There is a small list of doctors on our Registry of Lymphedema Doctors - viewtopic.php?f=25&t=5
What I would do, if i were you is:
(1) Double check that lymphedema clinic you went to for proper credentials and training.
(2) Make sure they at least tried to determine "why" you have those swollen nodes. This is critical.
(3) If you haven't enlisted the help of an infectious disease doctor, I would. You don't want any hidden viral or bacterial disease lurking around.
This page gives a full description of their specialty training and service:http://www.lymphedemapeople.com/wiki/do ... ase_doctor
(4) This is not meant toscare you, but it is also critical that they rule out any hidden lymphatic or hemotolgoical cancer (non-Hodgkins Lymphoma, Hodgkins Lymphoma etc). Have they ever given you your complete white cell count or done anything like a lymphocycte sub-set panel?
(5) If they get to a point where they insist a biopsy of a node is necessary, please, please do not allow them to go in and simply yank out a node. If what you are experiencing is early lymphedema or even if you are at risk for it, removing a node would/could be disasterous. That could in and of itself trigger full blown lymphedema.
When I had swollen nodes in my right inguinal area - with a history already of lymphoma, we needed to do a biopsy on one of the nodes. What they did is called a small needle biopsy (fine needle aspirate).
This page goes into that:
Small Needle Biopsyhttp://www.lymphedemapeople.com/wiki/do ... dle_biopsy
The small needle biopsy has been improved to the point where it is a very valuable tool and can provide accurate diganosis.
Since they did that on me, it has not in anyway caused a worsening of the lymphedema in my right leg.
All this, I know sounds daunting, but it really is necessary to cover all bases and make sure an accurate diagnosis is achieved.
I check the forums every day, so if I can answer any more questons, be of encouragment - anything - don't hesitate to post.
My very best to you!